Last Weekend's Recap (and a little Trikafta update)

Oops.  I actually wrote this a week ago and forgot to publish so here is last week's weekend recap...

I’m going to attempt a brief weekend recap.  I’ve been fighting a cold and I’m struggling today.  The worst part of this darn cold is that it came with a cough and I can’t sleep at night.  I’ve been fighting a headache since I woke up.  A has conferences this week so I’m in charge of the boys in the evening, which is usually fine, but with this cough and headache, it’s more challenging.  I’m hoping I can sleep in tomorrow.  Anyway, the weekend…

Friday.  The good:  We received W’s report card and he’s doing amazingly well.  We’re crazy proud of him.  He loves math and scored in the 89^th percentile on the standardized test.  He scored top marks in all subjects with the exception of Language Arts.  In that subject, he received a satisfactory.  He enjoyed Kindergarten, but he’s really taken off in first grade.  We went out to dinner to celebrate and let W choose the restaurant.  

The bad:  A’s insurance denied Trikafta.  I was incredibly disappointed.  How can they deny the only drug approved for his mutation?!  All that effort to get the drug approved and now he can’t even get it?!  Apparently the insurance company told his care team that the drug wasn’t on the formulary yet.  But we know of others with the same insurance (including A’s brother) who have gotten the drug.  Then we received a letter on Saturday stating that A first needed to try the alternatives – Orkambi and Symdeko.  Nope.  Not approved for A.  We’re a bit confused – was he denied because it isn’t on the formulary or because there are supposed alternatives?  Or both?  We’re appealing and pulling out all of the stops, but still very frustrating.  I’m holding out hope that once his care team explains there are no alternatives, he can get the drug.  We also found out that A's liver enzymes are "mildly elevated", which is worrisome to me.  I was really angry because apparently they've been "elevated for some time" (months), but it was never brought to our attention.  So more testing for A on that regard.  Admittedly, this whole process has been disappointing and discouraging after the high of finding out Trikafta was approved.  Stay tuned.

Saturday.  We invited a friend of S’s over for a play date.  All three boys had a really great time and A and I enjoyed catching up with S’s friend’s mom (Lauren).  Lauren is one of those dynamic people you want in your circle.  Super outgoing, driven, and kind.  I really like her and I’m glad that our kids are friends.

Sunday.  After our usual morning routine, A dropped the boys off at my mom’s so we could work on assembling an early birthday present for W.  He has been requesting a new bed for some time and he specifically wanted bunk beds.  His current bed was inherited from his cousin and he loved it for awhile, but we understood that he wanted to choose his own bed.  So I caved and purchased bunk beds that consist of a full size bed on the bottom, twin size on top, and can be taken apart and used as single beds.  The only problem?  It had about 10,000 pieces and took A and I over 6 hours to build.  So far, the boys love it!  They play on it, read on it, have sleep overs.  My rule is that sleepovers are only allowed on weekends because I want them to be well rested for school.  I will admit that it’s cute to walk passed W’s room and hear them chatting and giggling when they’re supposed to be sleeping.